It seems like my world is hovering right on the event horizon of a large black hole. My life- my little existence- is moving as fast as it ever has. One emotional storm after another hits. I think I have hit the highest level of stress I can manage and then another stress rolls in right on top of it and I realize I'm not at full stress capacity yet. But outside my little life the world is moving even faster. People can look at my life and it looks like I am doing nothing. I appear to have just disappeared.
When I am under stress I tend to become a recluse. I deal with the things that need to be done. I cut off all outside communication. I cut out all outside "distractions". I minimize everything into a model of efficiency and micromanage everything I have under my control. I make priority lists. I concentrate on getting the job done. Success is when I have dealt with the day's list. I go to bed when I have been successful. I get very little sleep when trying to "fix" my life. And the days seem to fly by- though the hours stretch on.
What I am trying to say is sorry. I have cut myself off from the world and really miss it. I would promise that I am now going to start participating again but that would be a lie. Problems are not resolved. I am personally fine (even in my extreme exhaustion). I am physically fine. I am usually cheerful. It's just that right now everyone around me is needing TLC and while I don't get any medals for being a tender and loving person full of empathy and compassion I can get things done. I am not saying I don't feel those things...I just don't radiate that caring personality. I'm the type they turn to when the phone calls are made, business needs attended to, and knee-caps need to be forcefully realigned. I do these things well.
This all started with a two week unplanned vacation to Oregon. I then came home only to return to Oregon for 48 more hours. I did see the ocean (therapy). I got to smell the forest and wet grass. I got to take a four mile roll on Eugen's bike paths. I enjoyed the comfort of traveling on a series of planes as a wheel chair user. I met interesting people and started to try and realign my reality. It's strange when I think of how interconnected all people are. One person in the family experiences a crisis and suddenly the whole family comes together with great haste. I am back in Tennessee and now my mother is staying with us.
I love my mom. She's funny, loving, and energetic. She has more energy in her little toe than I do in my entire body. While I am sitting on my porch drinking coffee and reading a book she will mow my lawn, build a flowerbed, and go shopping. I try to keep up but the end result is not always pretty. She forgets that there is a reason I live a slower pace of life. She hates being bored and expects me to help stave off all chances that she will ever sit down. I hate watching people work harder than me so I try to keep up. I know that eventually I will crash. She resents the fact that I will crash. We should have learned by now how to deal with this but, alas.... I think the usual pattern is unfolding.
My good friend's mother passed away while I was in Oregon. She lingered for an entire week and then....well I was still in Oregon. I wanted to say goodbye. I wanted to hug my friend and help the family (not by cooking - but I am good at dealing with the other stuff). I came home just in time for the funeral and sat numbly through the ceremony. I was too emotionally worn out to even shed the usual tear or two. Then I turned around and flew back to Oregon. I kept trying to tell myself it didn't matter that I wasn't there. I couldn't have done anything. I would have been in the way. But the truth is I needed to be there for myself. Grief is a funny thing. I kept telling myself I would deal with Dad's death when I knew mom was okay. I am still waiting for that time (or maybe I have dealt...just don't know it).
Other things keep happening. People get hurt in life altering ways and nothing can stay the same forever. But I keep grasping at my relatively simple and idyllic life- the one I had before April first. I keep telling myself this will end...it does always get easier (do I have sucker written across my forehead or what?). But for now....I am just trying to stay on my feet. Just trying to get through. Tomorrow may always be better. Tomorrow might bring another unprecedented disaster. Tomorrow....I might get another chance to catch my breath. Tomorrow I might get my handcycle.
So to those of you I have neglected. I think of you. I feel guilty for not keeping in touch. Just know...I am thinking of you. And when I finally achieve that which the law of physics states is impossible and pull myself away from the event horizon I will make contact. I miss you guys.
Thursday, May 8, 2008
Wednesday, March 19, 2008
It's not all in the head
It's not all in my head. The MS that is. We had suspected it wasn't but now there is visual proof in the form of a nice thing called an MRI. It's not all in my head. Whew. I know that sounds funny. But I was diagnosed with five little spots in my brain. All of them were smaller than the tip of my little finger. I wear large gloves...from the children's department. Over the course of nine years those five white spots have not changed. They stayed the same size, in the same place and made me feel like I was blowing this MS thing way out if proportion. It made no sense to me...five tiny white spots.
Before you think I am crazy let me explain something. I am a research junkie. I know what the "typical" MRI scan of the brain looks like. I know the lesions are usually a bit larger. Usually change of disease progression. I know the effectiveness of MS meds are determined by the slowing in brain lesion development. And because I have actually researched this I knew that my brain made no bloody sense *(I research other stuff too...like dark matter theory and how to make moorish coffee...it's not just about the MS)
Getting a piece of paper stating "no changes apparent at the time of this scan" would send me into a minor depression. How could there not be any changes? The loss of sensation in my legs had moved to above my knees? I walk with a cane 75% of the time because my leg muscles spasm and my balance is getting worse. I used to be able to run and now I can ask my feet to move and the response I get back is ---silence----silence---quoi? My legs don't talk to me. And it is getting worse. Rather rapidly in my estimation. I would say this confusion is the result of me doing too much research but...it had my doctors confused too. So they sent me to a neurologist at Vanderbilt (because every girl should have 3 neurologists in her life). The good thing is I like my doctors and they are always good at giving me the facts hard and straight like a good shot of Jagermeister. And for the past two and a half years that shot has tasted like "we can't really explain this but it could be in your thoracic spine." Subsequent MRIs showed nothing, nada, and zilch though the doc at Vanderbilt did say they were a bit crap (the MRI films that is).
So about two weeks ago I went down to Vandy (always a day trip...2 hours there...2 hours back...boring for my driver). And sure enough...the MRI showed nothing. Except a shadow of a lesion. Not bright white...more like a lighter gray. Not easily discernible until you paired it with the minor spinal cord atrophy (now those are scary words). And not in my thoracic spine but rather in my cervical spine. And about and inch to an inch and a half long (so it is equal to 1/65th of my total body length). According to the good doc this all makes sense given my increased symptoms of spinal cord dysfunction. And it is in a place he didn't expect. Damn.
I am glad we found out. I know that sounds strange but I am really glad that we know where the problems are. It was like staring at a really hard calculus problem for hours...just when you give up and put the book away part of the solution hits you with such force you want to bang your head against the wall for not seeing it sooner. I like having explanations for that I know to be explainable. I like knowing I have a reason for the worsening symptoms. It's not all in my head. It makes sense only....
Hey! Who said anything about it possibly being in my cervical spine? I wasn't prepared. I hadn't done my research. I intuitively know what this means. The words paraplegic vs quadriplegic come to mind. And while I like having an answer I have a lot more questions....and I think I might be grieving a bit. Because while people are very good at saying "It might not get worse" the truth is, based on historical evidence, it will. And maybe if I start now I will learn to accept the limitations as they happen....but really.....this is a cruel joke?
Before you think I am crazy let me explain something. I am a research junkie. I know what the "typical" MRI scan of the brain looks like. I know the lesions are usually a bit larger. Usually change of disease progression. I know the effectiveness of MS meds are determined by the slowing in brain lesion development. And because I have actually researched this I knew that my brain made no bloody sense *(I research other stuff too...like dark matter theory and how to make moorish coffee...it's not just about the MS)
Getting a piece of paper stating "no changes apparent at the time of this scan" would send me into a minor depression. How could there not be any changes? The loss of sensation in my legs had moved to above my knees? I walk with a cane 75% of the time because my leg muscles spasm and my balance is getting worse. I used to be able to run and now I can ask my feet to move and the response I get back is ---silence----silence---quoi? My legs don't talk to me. And it is getting worse. Rather rapidly in my estimation. I would say this confusion is the result of me doing too much research but...it had my doctors confused too. So they sent me to a neurologist at Vanderbilt (because every girl should have 3 neurologists in her life). The good thing is I like my doctors and they are always good at giving me the facts hard and straight like a good shot of Jagermeister. And for the past two and a half years that shot has tasted like "we can't really explain this but it could be in your thoracic spine." Subsequent MRIs showed nothing, nada, and zilch though the doc at Vanderbilt did say they were a bit crap (the MRI films that is).
So about two weeks ago I went down to Vandy (always a day trip...2 hours there...2 hours back...boring for my driver). And sure enough...the MRI showed nothing. Except a shadow of a lesion. Not bright white...more like a lighter gray. Not easily discernible until you paired it with the minor spinal cord atrophy (now those are scary words). And not in my thoracic spine but rather in my cervical spine. And about and inch to an inch and a half long (so it is equal to 1/65th of my total body length). According to the good doc this all makes sense given my increased symptoms of spinal cord dysfunction. And it is in a place he didn't expect. Damn.
I am glad we found out. I know that sounds strange but I am really glad that we know where the problems are. It was like staring at a really hard calculus problem for hours...just when you give up and put the book away part of the solution hits you with such force you want to bang your head against the wall for not seeing it sooner. I like having explanations for that I know to be explainable. I like knowing I have a reason for the worsening symptoms. It's not all in my head. It makes sense only....
Hey! Who said anything about it possibly being in my cervical spine? I wasn't prepared. I hadn't done my research. I intuitively know what this means. The words paraplegic vs quadriplegic come to mind. And while I like having an answer I have a lot more questions....and I think I might be grieving a bit. Because while people are very good at saying "It might not get worse" the truth is, based on historical evidence, it will. And maybe if I start now I will learn to accept the limitations as they happen....but really.....this is a cruel joke?
On our long trip home from the clinic I kept reminding myself...."be careful what you wish for." All I wanted was knowledge. I got it. But....it makes more sense this way. And it's not all in my head.
So sorry...silence in the blog world and then a pretty self involved post. Next time-the Disney Trip (yup...I had a great time)
A picture from the trip until next time:
So sorry...silence in the blog world and then a pretty self involved post. Next time-the Disney Trip (yup...I had a great time)
A picture from the trip until next time:
I didn't get to enjoy the Swiss Family Tree House but I had fun embarassing my friend, Sara.
Wednesday, February 20, 2008
D-Day
D-Day. Most people think of the Battle of Normandy. Not I. Well, yeah I do. That's because I love history and ever since my Granddad let slip that he had been there I have done some major studying. But when I say D-Day I generally mean Diagnosis Day- February 24, 1999. It has become a major holiday for me. It started out as "if I made it through one year then I can manage two" and has turned into a big celebration. Every year I do something special to mark another year of being me. This is year number nine. One more year until ten...but it will be hard to beat this year's celebration. I may have mentioned it once or twice (cough) but we are going to Disneyworld.
It's funny how important it is that we take this trip. When I was thirteen I promised my little sis that I would never go to Disneyland or Disneyworld without her. We made a pact and amazingly have kept it. Both of us have had several opportunities to go to Disneyworld and both of us have passed those by. I even ate Thanksgiving dinner at the Swan and Dolphin Resort once...looking over the parks but I did not give in (It wasn't the best way to celebrate Thanksgiving either). This year we are doing it. I was afraid that maybe I have grown up too much to enjoy it. Maybe I am a little too cynical. Maybe I will hate it and my expectations are to high. I don't think so. 'Cause this year I will celebrate D-Day at Epcott. With my sis, our guys, and two of our best friends.
This trip is also important because it is the reason I got the wheelchair. Sis said it was either that or one of those electric scooters. I've used one of those and kept fearing that I would run over a little kid, run off the path, or experience some other great misfortune. Control Issues. So I started the great search for the right wheelchair for this trip. I bought Ezra in October so I could "buff" up. I only use him during shopping trips or going out to eat in crowded restaurants but I have found my new love. I love the speed. I love the danger. I love the power to roll over people's feet if they don't acknowledge my presence. And I probably would still be stumping around with my cane, wondering why I move at a drunken snail's pace, had it not been for sis (with the whole family standing behind her, nodding their heads and looking very stern). Same goes for the handicapped parking badge....very useful for when you need to extract the wheelchair from the trunk of the car.
This year I finally was able to say "Hey, I'm a crip!". What a relief. I had locked myself in a miserable hole of self doubt and longing for the good ol' days. I had tried to meet people's expectations or what I perceived those expectations to be. I had tried to ignore the MS. I knew the denial wasn't healthy. I knew that I was getting worse but man did I try to ignore it. Getting a cane was really hard. The transition to using the wheelchair has been a lot easier. Because finally I was able to see myself as a person with a disability. The disability helps makes me me. It doesn't detract from who I am....it is who I am.
This year I have found a community of people I identify with. People who write about their frustrations, pain and simple joys with eloquence and humor. I am so grateful. More so than anybody can understand. This community is something I can't share with my family...just as my family, supportive and wonderful, can not always break through the loneliness of my chronic condition. They are always there to support me but the can't know....I have found people who know.
Last week I went out to eat with friends. We had a "girl's night out" (the guys needed an excuse to have a "macho night"). Our waiter flirted with me. I was in my chair. It was an innocent flirtation. At first I didn't recognize it because who notices the girl in the chair? But it was nice. He gave me a great gift because he viewed me as a person. In the course of conversation he revealed that he had a brother in a wheelchair- that explains a whole heck of a lot. He also got a huge tip. I had forgotten what it was like to have strangers treat me like a person. And I gained a new level of self confidence. Now I am looking forward to a full week where I spend the majority of every day rolling around. Sweet freedom.
So here's to D-Day number nine. May it be the best one yet.
It's funny how important it is that we take this trip. When I was thirteen I promised my little sis that I would never go to Disneyland or Disneyworld without her. We made a pact and amazingly have kept it. Both of us have had several opportunities to go to Disneyworld and both of us have passed those by. I even ate Thanksgiving dinner at the Swan and Dolphin Resort once...looking over the parks but I did not give in (It wasn't the best way to celebrate Thanksgiving either). This year we are doing it. I was afraid that maybe I have grown up too much to enjoy it. Maybe I am a little too cynical. Maybe I will hate it and my expectations are to high. I don't think so. 'Cause this year I will celebrate D-Day at Epcott. With my sis, our guys, and two of our best friends.
This trip is also important because it is the reason I got the wheelchair. Sis said it was either that or one of those electric scooters. I've used one of those and kept fearing that I would run over a little kid, run off the path, or experience some other great misfortune. Control Issues. So I started the great search for the right wheelchair for this trip. I bought Ezra in October so I could "buff" up. I only use him during shopping trips or going out to eat in crowded restaurants but I have found my new love. I love the speed. I love the danger. I love the power to roll over people's feet if they don't acknowledge my presence. And I probably would still be stumping around with my cane, wondering why I move at a drunken snail's pace, had it not been for sis (with the whole family standing behind her, nodding their heads and looking very stern). Same goes for the handicapped parking badge....very useful for when you need to extract the wheelchair from the trunk of the car.
This year I finally was able to say "Hey, I'm a crip!". What a relief. I had locked myself in a miserable hole of self doubt and longing for the good ol' days. I had tried to meet people's expectations or what I perceived those expectations to be. I had tried to ignore the MS. I knew the denial wasn't healthy. I knew that I was getting worse but man did I try to ignore it. Getting a cane was really hard. The transition to using the wheelchair has been a lot easier. Because finally I was able to see myself as a person with a disability. The disability helps makes me me. It doesn't detract from who I am....it is who I am.
This year I have found a community of people I identify with. People who write about their frustrations, pain and simple joys with eloquence and humor. I am so grateful. More so than anybody can understand. This community is something I can't share with my family...just as my family, supportive and wonderful, can not always break through the loneliness of my chronic condition. They are always there to support me but the can't know....I have found people who know.
Last week I went out to eat with friends. We had a "girl's night out" (the guys needed an excuse to have a "macho night"). Our waiter flirted with me. I was in my chair. It was an innocent flirtation. At first I didn't recognize it because who notices the girl in the chair? But it was nice. He gave me a great gift because he viewed me as a person. In the course of conversation he revealed that he had a brother in a wheelchair- that explains a whole heck of a lot. He also got a huge tip. I had forgotten what it was like to have strangers treat me like a person. And I gained a new level of self confidence. Now I am looking forward to a full week where I spend the majority of every day rolling around. Sweet freedom.
So here's to D-Day number nine. May it be the best one yet.
Tuesday, February 12, 2008
tomatoes & my bête noire
So I was thinking about the U.S. invasion and subsequent occupation of Iraq as I took my shower this morning. See? I don't actually think about MS all of the time. Actually I think about it relatively little in comparison to other things. Like politics. I spend of my spare time thinking about international relations (when I am not busy dealing with health insurance companies here at work). This is an important election year (understatement) so I am sitting around making flow charts of various arguments, trying not to be influenced by wardrobes, and generally considering the issues important to me. I have trouble understanding why people don't have fun doing this.
So here's my really random thought for the day....governments are like tomatoes. I am a big supporter of democracy- in theory. I like the way it works. Slow, steady, representing the people and all that gobbly-gook. So take the government in Iraq. A democracy in words only. I really doubt the history books are going to say that the U.S. was the reason that Iraq became a democracy. Because it's like a hydroponically grown tomato. Sure it looks and feels like a tomato but it doesn't always have the taste of a real tomato. It is grown for one purpose. Rapid consumption- often at the wrong time of year. It will never be as good as a tomato grown at a local farm or in your own garden. It will always have that slightly pithy texture and its perfect skin, no blemishes at all, will always be slightly tougher. It's the ratty tomato plant in granddad's garden that produces the best fruit. It doesn't look perfect. But it is the real thing. And that makes it beautiful despite it's imperfections.
I have always hated the idea of "spreading freedom" and "liberating the people." I have no problem when the military partakes in peace keeping efforts to stop genocide and loss of human life but I have major issues with "liberating the people and forcing them to accept our form of government." It may seem a little naive but isn't this something people have to decide for themselves? Rebellion and changes in government happen naturally. Sometimes our government likes what happens and sometimes....Hamas in the Gaza strip. And when there is a leader who tightly controls everything (usually called a dictator) we have someone to hate. It doesn't work that way in a democracy. Technically we should dislike everyone when a policy we disagree with is made...voice of the people and all. I think this may be why US citizens are generally despised (among other things). After all, we don't always act like team players (understatement).
So back to the tomato analogy...it gave me some hope. I am not going to claim to know how to "fix" the unrest in Afghanistan and Iraq. I don't know if we can. But I do know that we've helped mess things up. When you think of war you always think of bad guys and good guys. We have been hearing about the "bad guys" for a long time. A lot since 9/11. But I no longer believe in bad guys and good guys because I think everyone believes they are the good guys. We believe we are in the right as does the other side. So that means that sometimes I have to stop and say "I am one of the bad guys." I am not advocating on the side of terrorism. I hate violence. I know that sometimes it seems unavoidable. I know that in the case of Iraq diplomacy was a no go. (did we try diplomacy?) So back to the tomato.... If you take same plant that is in the greenhouse and put it outside eventually it will grow real tomatoes. Not force grown tomatoes. They are not going to look like the tomatoes your neighbor grows. You will use different fertilizer, different soil and in the end it will be a completely different plant. It might take a couple tries. You might have to change a few things- shade, surrounding plants, the depth of mulch etc. but when you finally manage to grow your own natural plant you feel good. The fruit tastes that much better. And you can always improve on what you know to be good.
So that's what I thought about in the shower. Scott asked "what thought came first...the tomato or Iraq?" I honestly don't know but it sure beat thinking about ....
My bête noire. Health Insurance. I hate health insurance. I hate the system that commercializes human life like we are automobiles. I hate the idea that you make a living on betting whether or not people will be healthy. I hate the idea that some person sitting at a desk somewhere will decide whether or not my condition will get treated. I hate watching people make the choice: Do I live and go into bankruptcy or do I accept this as fate and all my family has to worry about is the funeral expenses. I hate dealing with insurance companies. I hate my health insurance company. I hate that I have to think about it.
When I was a freshman in high school I joined the debate team. The national topic that year was health insurance. I had never really had to think about health insurance before. So my debate partner and I championed the cause of HMO's (hey the point was to win the debate...not believe in what you were debating). After out first win I knew that HMO's were not the answer. After our first few debates I knew that there didn't seem to be a clear answer and in that rather teenage self centered way I was not thinking it wouldn't work for humanitarian reasons - I just knew the whole system is flawed. I wasn't going to win the debate. The nation wasn't winning the debate.
People break. We wear down and develop strange illnesses and conditions. We get sick and we reproduce. We are in accidents and we fight in wars where the whole point is to maximize damage done to other humans. We abuse our bodies. We push ourselves so far that out bodies can't keep up. We sometimes need medical attention. Why? Because we are human! Because we are living organisms and not machines made of metal and fiberglass. So creating a whole commercial business that gambles on whether or not people will get sick is bloody stupid. And then prices go up because insurance companies are having to raise premiums because they aren't making a profit. Because they have to pay doctors. Because people do need medical attention or doctors would not exist in the first place.
If debating the merits of certain insurance plans did not convince me that I hate medical insurance getting my diagnosis sure did. I was in college and still on my parents health care plan. Thank goodness. But the question was what to do after college? Prior to the MS I was strongly considering the military (kinda glad that didn't work out- thanks to the dx- tomatoes and all that). Now I was faced with a disability that was not severe enough to be counted as a disability but needed medical attention. I was graduating with a degree but no money. I had to get a job with health benefits. Because if I had a month lapse in coverage between commercial group coverage programs then I would fall into that "pre-existing condition" category. They wouldn't pay for anything related to my MS for six months to a year depending on the plan. Experience had already taught me that everything is related to MS. You have female problems-must be the MS. You have sprained your ankle-the MS caused you to fall. You have floaters in your eyes causing intense headaches-MS You have a cavity in the tooth?-MS Plantars warts? Athletes foot? a busted appendix?- MS (In truth I have never had a problem with my appendix but I am waiting and it will all be the fault of MS). My whole life would become a pre-existing condition. Hey! It's life. It is a pre-existing condition from the moment you pop out of mommy's womb till the moment you kick the bucket.
I really did try to get a job with health insurance right off but we had just elected a new president and had rather large national disaster and our economy was tanking. Parents could keep me on their plan as long as I was not entirely independent. I found a job that offered health benefits after three months. I became an accountant to a very small law firm. I was not pursuing the job of my dreams or even something I had training in. I was in the pursuit of health insurance- not happiness. And after three months my boss refused to give it to me because I would raise premium costs for every employee. I know that I could have taken legal action. I know I should have raised a stink. I know I still had no money and had nowhere to go if I got fired. I felt trapped. I thought if I just held on he would relent. I was so completely wrong. So after nine months of misery I called my boyfriend (now my hubby) and said " come get me and move me to TN."
I went through a couple more jobs...all with the same insurance problem -as in it was not offered. It was not an option. I was willing to do anything just to get insurance. Clean toilets. Work at a gas station. Wear high heels every freaking impossible day. The problem was I needed money to live so if I got a job I had to take it. The next problem was that even though the job might be "good" it didn't come with benefits. And I looked and searched and....no insurance. The day finally came when my parents said "ok...they are kicking you off the insurance" No duh. It probably should have happened several years before. And I said "uh-oh."
I could have moved back home to live with them. I lived with Scott at the time and we were managing...barely. He had a job that provided insurance. Good insurance We love each other very much and intend to spend the rest of our lives together. So we got married. Just like that- 2 weeks notice. It pissed a lot of people off. It wasn't that getting married was a bad thing...it was fabulous. I love being married. It was a timing issue. It was like having a shot gun wedding because I was....disabled. And the thought going through everyones head was "is she marrying him for his insurance?" No! and yet yes. Damn. Our relationship means so much more than the insurance. We got married then so we could stay together. It was, at the time, the only option. I think the family has forgiven us. They have seen that I am not using him to get at his benefits but why do we live in a country where such a thought would even cross their minds? It wasn't fair. And it isn't just me. Lot's of couple's have to make this choice. And let's not even talk about the couples who should be able to make this choice and aren't allowed to. The couples that are not recognized or given full rights....err, blood pressure just hit a new high.
The thing is.....why are we having to base our life choices around access to a basic human right? "Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control." (Universal Declaration of Human Rights, Article 25., Section 1). Ha!!!
The truth is now I have a happy marriage, a job I like (but it doesn't have benefits because they can't afford to provide them-- and its a doctor's office- and they really really honestly can't afford to offer health insurance because health insurance companies are not paying as well as the used to), and a pretty good life all around but....
I work for a doctor calling insurance companies and getting surgeries pre-certified so the good doc gets paid. I spend all day on hold so I can convince some minion that the doctor knows what he is doing. I have to go though lists of multiple question surveys to fulfill requirements for surgery approval. He's a doctor for heavens sake...he knows what he is doing. He knows if it needs to be done. He does not perform surgery just because he like cutting people and seeing the blood squirt. And sometimes I have to lie to convince Mr. Insurance guy that the surgery needs to be done. I hate this. Why can't they just trust the doctor's years of medical school? And sometimes I have to schedule surgery for someone who does not have insurance Our doctor does it at a huge discount if not for free but the hospital does not! No, our portion is $300 for the doc and $7,000 for the hospital. And that's not cool. I see the patients eyes glass over as they contemplate trying to raise the money....I see them wondering if it is worth it. Do they really need that tumor in their neck removed....wouldn't it be easier just to ignore it? I see that look and a little part of me dies. I know that since we have diagnosed them they will never be able to get health insurance..they are uninsurable because they are sick and we are trying to save their life. Trying to save their life so they can face a future of economic difficulty and a future of no health insurance, I see that look and know it is hopelessness and defeat. Some overcome it...some don't. I can help find programs to pay. I can sweet talk the people at the hospital into providing discounts. I can talk to them and tell them its not fair. I can try to convince them it's all worth it. Most of all I can stay mad, send off my letters to politicians, and curse this stupid system that says a healthy person is worth more than a sick one. I hate health insurance It has been my enemy for so long I don't know what I am ever going to do if they can fix the system. It is my job. It is my future. It has dictated life choices. And I am sick of it....our system is sick.
Well there's a couple of rants. I have some insurence companies to call.....
So here's my really random thought for the day....governments are like tomatoes. I am a big supporter of democracy- in theory. I like the way it works. Slow, steady, representing the people and all that gobbly-gook. So take the government in Iraq. A democracy in words only. I really doubt the history books are going to say that the U.S. was the reason that Iraq became a democracy. Because it's like a hydroponically grown tomato. Sure it looks and feels like a tomato but it doesn't always have the taste of a real tomato. It is grown for one purpose. Rapid consumption- often at the wrong time of year. It will never be as good as a tomato grown at a local farm or in your own garden. It will always have that slightly pithy texture and its perfect skin, no blemishes at all, will always be slightly tougher. It's the ratty tomato plant in granddad's garden that produces the best fruit. It doesn't look perfect. But it is the real thing. And that makes it beautiful despite it's imperfections.
I have always hated the idea of "spreading freedom" and "liberating the people." I have no problem when the military partakes in peace keeping efforts to stop genocide and loss of human life but I have major issues with "liberating the people and forcing them to accept our form of government." It may seem a little naive but isn't this something people have to decide for themselves? Rebellion and changes in government happen naturally. Sometimes our government likes what happens and sometimes....Hamas in the Gaza strip. And when there is a leader who tightly controls everything (usually called a dictator) we have someone to hate. It doesn't work that way in a democracy. Technically we should dislike everyone when a policy we disagree with is made...voice of the people and all. I think this may be why US citizens are generally despised (among other things). After all, we don't always act like team players (understatement).
So back to the tomato analogy...it gave me some hope. I am not going to claim to know how to "fix" the unrest in Afghanistan and Iraq. I don't know if we can. But I do know that we've helped mess things up. When you think of war you always think of bad guys and good guys. We have been hearing about the "bad guys" for a long time. A lot since 9/11. But I no longer believe in bad guys and good guys because I think everyone believes they are the good guys. We believe we are in the right as does the other side. So that means that sometimes I have to stop and say "I am one of the bad guys." I am not advocating on the side of terrorism. I hate violence. I know that sometimes it seems unavoidable. I know that in the case of Iraq diplomacy was a no go. (did we try diplomacy?) So back to the tomato.... If you take same plant that is in the greenhouse and put it outside eventually it will grow real tomatoes. Not force grown tomatoes. They are not going to look like the tomatoes your neighbor grows. You will use different fertilizer, different soil and in the end it will be a completely different plant. It might take a couple tries. You might have to change a few things- shade, surrounding plants, the depth of mulch etc. but when you finally manage to grow your own natural plant you feel good. The fruit tastes that much better. And you can always improve on what you know to be good.
So that's what I thought about in the shower. Scott asked "what thought came first...the tomato or Iraq?" I honestly don't know but it sure beat thinking about ....
My bête noire. Health Insurance. I hate health insurance. I hate the system that commercializes human life like we are automobiles. I hate the idea that you make a living on betting whether or not people will be healthy. I hate the idea that some person sitting at a desk somewhere will decide whether or not my condition will get treated. I hate watching people make the choice: Do I live and go into bankruptcy or do I accept this as fate and all my family has to worry about is the funeral expenses. I hate dealing with insurance companies. I hate my health insurance company. I hate that I have to think about it.
When I was a freshman in high school I joined the debate team. The national topic that year was health insurance. I had never really had to think about health insurance before. So my debate partner and I championed the cause of HMO's (hey the point was to win the debate...not believe in what you were debating). After out first win I knew that HMO's were not the answer. After our first few debates I knew that there didn't seem to be a clear answer and in that rather teenage self centered way I was not thinking it wouldn't work for humanitarian reasons - I just knew the whole system is flawed. I wasn't going to win the debate. The nation wasn't winning the debate.
People break. We wear down and develop strange illnesses and conditions. We get sick and we reproduce. We are in accidents and we fight in wars where the whole point is to maximize damage done to other humans. We abuse our bodies. We push ourselves so far that out bodies can't keep up. We sometimes need medical attention. Why? Because we are human! Because we are living organisms and not machines made of metal and fiberglass. So creating a whole commercial business that gambles on whether or not people will get sick is bloody stupid. And then prices go up because insurance companies are having to raise premiums because they aren't making a profit. Because they have to pay doctors. Because people do need medical attention or doctors would not exist in the first place.
If debating the merits of certain insurance plans did not convince me that I hate medical insurance getting my diagnosis sure did. I was in college and still on my parents health care plan. Thank goodness. But the question was what to do after college? Prior to the MS I was strongly considering the military (kinda glad that didn't work out- thanks to the dx- tomatoes and all that). Now I was faced with a disability that was not severe enough to be counted as a disability but needed medical attention. I was graduating with a degree but no money. I had to get a job with health benefits. Because if I had a month lapse in coverage between commercial group coverage programs then I would fall into that "pre-existing condition" category. They wouldn't pay for anything related to my MS for six months to a year depending on the plan. Experience had already taught me that everything is related to MS. You have female problems-must be the MS. You have sprained your ankle-the MS caused you to fall. You have floaters in your eyes causing intense headaches-MS You have a cavity in the tooth?-MS Plantars warts? Athletes foot? a busted appendix?- MS (In truth I have never had a problem with my appendix but I am waiting and it will all be the fault of MS). My whole life would become a pre-existing condition. Hey! It's life. It is a pre-existing condition from the moment you pop out of mommy's womb till the moment you kick the bucket.
I really did try to get a job with health insurance right off but we had just elected a new president and had rather large national disaster and our economy was tanking. Parents could keep me on their plan as long as I was not entirely independent. I found a job that offered health benefits after three months. I became an accountant to a very small law firm. I was not pursuing the job of my dreams or even something I had training in. I was in the pursuit of health insurance- not happiness. And after three months my boss refused to give it to me because I would raise premium costs for every employee. I know that I could have taken legal action. I know I should have raised a stink. I know I still had no money and had nowhere to go if I got fired. I felt trapped. I thought if I just held on he would relent. I was so completely wrong. So after nine months of misery I called my boyfriend (now my hubby) and said " come get me and move me to TN."
I went through a couple more jobs...all with the same insurance problem -as in it was not offered. It was not an option. I was willing to do anything just to get insurance. Clean toilets. Work at a gas station. Wear high heels every freaking impossible day. The problem was I needed money to live so if I got a job I had to take it. The next problem was that even though the job might be "good" it didn't come with benefits. And I looked and searched and....no insurance. The day finally came when my parents said "ok...they are kicking you off the insurance" No duh. It probably should have happened several years before. And I said "uh-oh."
I could have moved back home to live with them. I lived with Scott at the time and we were managing...barely. He had a job that provided insurance. Good insurance We love each other very much and intend to spend the rest of our lives together. So we got married. Just like that- 2 weeks notice. It pissed a lot of people off. It wasn't that getting married was a bad thing...it was fabulous. I love being married. It was a timing issue. It was like having a shot gun wedding because I was....disabled. And the thought going through everyones head was "is she marrying him for his insurance?" No! and yet yes. Damn. Our relationship means so much more than the insurance. We got married then so we could stay together. It was, at the time, the only option. I think the family has forgiven us. They have seen that I am not using him to get at his benefits but why do we live in a country where such a thought would even cross their minds? It wasn't fair. And it isn't just me. Lot's of couple's have to make this choice. And let's not even talk about the couples who should be able to make this choice and aren't allowed to. The couples that are not recognized or given full rights....err, blood pressure just hit a new high.
The thing is.....why are we having to base our life choices around access to a basic human right? "Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control." (Universal Declaration of Human Rights, Article 25., Section 1). Ha!!!
The truth is now I have a happy marriage, a job I like (but it doesn't have benefits because they can't afford to provide them-- and its a doctor's office- and they really really honestly can't afford to offer health insurance because health insurance companies are not paying as well as the used to), and a pretty good life all around but....
I work for a doctor calling insurance companies and getting surgeries pre-certified so the good doc gets paid. I spend all day on hold so I can convince some minion that the doctor knows what he is doing. I have to go though lists of multiple question surveys to fulfill requirements for surgery approval. He's a doctor for heavens sake...he knows what he is doing. He knows if it needs to be done. He does not perform surgery just because he like cutting people and seeing the blood squirt. And sometimes I have to lie to convince Mr. Insurance guy that the surgery needs to be done. I hate this. Why can't they just trust the doctor's years of medical school? And sometimes I have to schedule surgery for someone who does not have insurance Our doctor does it at a huge discount if not for free but the hospital does not! No, our portion is $300 for the doc and $7,000 for the hospital. And that's not cool. I see the patients eyes glass over as they contemplate trying to raise the money....I see them wondering if it is worth it. Do they really need that tumor in their neck removed....wouldn't it be easier just to ignore it? I see that look and a little part of me dies. I know that since we have diagnosed them they will never be able to get health insurance..they are uninsurable because they are sick and we are trying to save their life. Trying to save their life so they can face a future of economic difficulty and a future of no health insurance, I see that look and know it is hopelessness and defeat. Some overcome it...some don't. I can help find programs to pay. I can sweet talk the people at the hospital into providing discounts. I can talk to them and tell them its not fair. I can try to convince them it's all worth it. Most of all I can stay mad, send off my letters to politicians, and curse this stupid system that says a healthy person is worth more than a sick one. I hate health insurance It has been my enemy for so long I don't know what I am ever going to do if they can fix the system. It is my job. It is my future. It has dictated life choices. And I am sick of it....our system is sick.
Well there's a couple of rants. I have some insurence companies to call.....
Thursday, February 7, 2008
forced Relaxation and issues with illness
I hate being ill. I know I have a chronic illness that I live with but I hate being ill. As in sore throats, stomach yuckies, the flu and headaches. I turn into a complete whiny wuss at the first sign of illness. Then I stoically try to act as if nothing is wrong while I wander around with a pained expression on my face...hoping someone will ask me what is wrong so I have an opportunity to complain. I know that I am being stupid. I know this drives other people crazy and all I can say is I'm working on it. Maybe it was because being diagnosed as psychosomatic (a misdiagnosis but still...) at an early age- I am afraid I am making it happen and it isn't real until someone else says it is. So when I get sick I am pretty miserable. I don't really count my MS as an illness. Illnesses can be cured, or go away, or can be fixed...my MS is my chronically different condition. It's not an illness.
Thanks to that great "condition" when I do get the sniffles or the local plague (you know that crud everyone gets that turns entire communities into zombie land for two weeks?) I am usually sick for about half the time everyone else is. My immune system is so kick butt they have me on two different immunosuppressants and still I continue to defy common illness. My body is nothing if not elitist when it comes to germs and little microscopic organisms. I fight off infections with zeal and then those little T-cells go on to attack my nervous system (I have some issues with my rogue white blood cells- they don't ever listen). Then I can take care of everyone else while dealing with familiar but worsening symptoms. I actually prefer it that way.
So when I got a knot the size of the International Space Station in my shoulder last Friday I chose to ignore it. I didn't totally ignore it...I tried my all active life remedies. I took 800 mg of Ibuprofen twice daily. I used the heating pad on it (yes I have heat tolerance issues but the shoulder hurt). I took a hot bath to soak it (same comment as before). I massaged it and I hate massages with a passion. I put my magic Tiger's Balm on it...about four times an hour. Yesterday I realized the pain was radiating up my neck into my jaw line. It also was radiating down my right arm. And I couldn’t turn my head. And I want to ride roller coasters in two weeks.
So I saw my doctor. (who is my boss so it doesn't seem quite as extreme as actually going to the doctor). Sure enough it was a huge knot in my shoulder that was the size of the International Space Station as well as very rapid, rather intense, muscle spasms and yes it did make me shriek when he placed his finger on my shoulder in the particular spot and applied moderate pressure.
I am on muscle relaxers for the first time in my life (honestly- other than my legs I am a pretty relaxed person- and the legs don't fall under the same category as the rest of my body). My legs, amazingly enough are feeling great. they still don't listen to me but they don't hurt. And I don't shake violently every time I stand up or change position. My neck still hurts. And I am so whining about it. It isn't fair that I have to deal with this as well as MS. It makes me very grumpy. And that it ridiculous. I am being a very silly little girl.But this has given me an opportunity to experience the future. My family drives me around. I am completely dependant on them for transportation. (muscle relaxers+ not feeling feet + not turning head = should not drive). And right now it’s not that bad. They are very good about making sure I get to where I need to go. But I have already experienced what it will be like for most my life:
Me: Sissy, will you take me home now?
Sis: And what do you plan to do when you get home?
Me: Well. Maybe a load of dishes. Feed the pups. Pay some bills. Clean off the table. And I really probably should sort the recycling. (at this point she rolls her eyes)
Sis: And do you think any of this will make your arm feel better?
Me: Uhm...no. (honestly is always the best policy except when...)
Sis: No. Not driving you home. You can sit on my couch and watch a movie. Or take a nap. Or do nothing. Those are your choices.
Shit. So this being driven places does not mean I have the same privileges that other people with chauffeurs have. I kinda always guessed this would be the case but had to find out for myself (just for the record I know she was right- I just hate that she was right).So add this to the list of medical things I reserve the right to be a complete wuss about. Knots in my shoulders. And I'll stop whining now because in two weeks I'll be able to ride roller coasters. And I'll work on understanding that just because I have my "condition" other things can still go wrong with my body. Hard to stomach but true. And in the meantime I am really quite relaxed (and it's not a limo but works for me).
Thanks to that great "condition" when I do get the sniffles or the local plague (you know that crud everyone gets that turns entire communities into zombie land for two weeks?) I am usually sick for about half the time everyone else is. My immune system is so kick butt they have me on two different immunosuppressants and still I continue to defy common illness. My body is nothing if not elitist when it comes to germs and little microscopic organisms. I fight off infections with zeal and then those little T-cells go on to attack my nervous system (I have some issues with my rogue white blood cells- they don't ever listen). Then I can take care of everyone else while dealing with familiar but worsening symptoms. I actually prefer it that way.
So when I got a knot the size of the International Space Station in my shoulder last Friday I chose to ignore it. I didn't totally ignore it...I tried my all active life remedies. I took 800 mg of Ibuprofen twice daily. I used the heating pad on it (yes I have heat tolerance issues but the shoulder hurt). I took a hot bath to soak it (same comment as before). I massaged it and I hate massages with a passion. I put my magic Tiger's Balm on it...about four times an hour. Yesterday I realized the pain was radiating up my neck into my jaw line. It also was radiating down my right arm. And I couldn’t turn my head. And I want to ride roller coasters in two weeks.
So I saw my doctor. (who is my boss so it doesn't seem quite as extreme as actually going to the doctor). Sure enough it was a huge knot in my shoulder that was the size of the International Space Station as well as very rapid, rather intense, muscle spasms and yes it did make me shriek when he placed his finger on my shoulder in the particular spot and applied moderate pressure.
I am on muscle relaxers for the first time in my life (honestly- other than my legs I am a pretty relaxed person- and the legs don't fall under the same category as the rest of my body). My legs, amazingly enough are feeling great. they still don't listen to me but they don't hurt. And I don't shake violently every time I stand up or change position. My neck still hurts. And I am so whining about it. It isn't fair that I have to deal with this as well as MS. It makes me very grumpy. And that it ridiculous. I am being a very silly little girl.But this has given me an opportunity to experience the future. My family drives me around. I am completely dependant on them for transportation. (muscle relaxers+ not feeling feet + not turning head = should not drive). And right now it’s not that bad. They are very good about making sure I get to where I need to go. But I have already experienced what it will be like for most my life:
Me: Sissy, will you take me home now?
Sis: And what do you plan to do when you get home?
Me: Well. Maybe a load of dishes. Feed the pups. Pay some bills. Clean off the table. And I really probably should sort the recycling. (at this point she rolls her eyes)
Sis: And do you think any of this will make your arm feel better?
Me: Uhm...no. (honestly is always the best policy except when...)
Sis: No. Not driving you home. You can sit on my couch and watch a movie. Or take a nap. Or do nothing. Those are your choices.
Shit. So this being driven places does not mean I have the same privileges that other people with chauffeurs have. I kinda always guessed this would be the case but had to find out for myself (just for the record I know she was right- I just hate that she was right).So add this to the list of medical things I reserve the right to be a complete wuss about. Knots in my shoulders. And I'll stop whining now because in two weeks I'll be able to ride roller coasters. And I'll work on understanding that just because I have my "condition" other things can still go wrong with my body. Hard to stomach but true. And in the meantime I am really quite relaxed (and it's not a limo but works for me).
Sunday, February 3, 2008
TAG! You're it!
TAG! You're it!
Here is how you play. Once you have been tagged you have to write a blog with 10 random things about yourself: facts, goals, habits, and at the end, choose 10 people to be tagged, listing their names and why you tagged them. Don't forget to send them a comment (You're it!) and to read your blog for instructions.
Since you can't re-tag me, let me know when you've posted your tagged blog.
Ten random things about me...
1. I love Sushi. When I close my eyes and try to think of the perfect meal that's what I come up with. So simple and so filling.
2. When I was little I wanted to be the first ballet dancing astronaut. When I got a little older I changed it a ballet dancing firefighter.
3. I am a compulsive news browser. I seriously go to about 16 different news sites about 8 times a day.
4. I always buy myself flowers if I go shopping alone.
5. I have set myself on fire while boiling water, caught my hair in an electric mixer, burnt no-bake cookies, made grey instant macarony and cheese and caught my oven on fire baking brown and serve rolls. I avoid the kitchen.
6. I collect stamps. I smuggled soviet era stamps out of Russia when I was an exchange student.
7. I once wrote in a journal that I never could date someone who was primarily interested in politics and philosophy. I married a Philosophy/ International Relations double major and we spend many evenings discussing both over coffee.
8. I miss my father. It has been almost 3 years since he died peacefully in his sleep and I really miss him.
9. I still sleep with my "teddy mouse" every night. I took him to Russia with me. I took him to college with me. Now my husband sweetly consents to share our bed with Hans the mouse. I can't sleep unless I have him tucked under one arm.
10. I hate orange juice. I know it is good for me but I really can't stand it.
Here's who I'm tagging... well noone and everyone. I can't think of people to tag so I am not going to. But I would like to read about other people's randomness (what makes us an individual).
Here is how you play. Once you have been tagged you have to write a blog with 10 random things about yourself: facts, goals, habits, and at the end, choose 10 people to be tagged, listing their names and why you tagged them. Don't forget to send them a comment (You're it!) and to read your blog for instructions.
Since you can't re-tag me, let me know when you've posted your tagged blog.
Ten random things about me...
1. I love Sushi. When I close my eyes and try to think of the perfect meal that's what I come up with. So simple and so filling.
2. When I was little I wanted to be the first ballet dancing astronaut. When I got a little older I changed it a ballet dancing firefighter.
3. I am a compulsive news browser. I seriously go to about 16 different news sites about 8 times a day.
4. I always buy myself flowers if I go shopping alone.
5. I have set myself on fire while boiling water, caught my hair in an electric mixer, burnt no-bake cookies, made grey instant macarony and cheese and caught my oven on fire baking brown and serve rolls. I avoid the kitchen.
6. I collect stamps. I smuggled soviet era stamps out of Russia when I was an exchange student.
7. I once wrote in a journal that I never could date someone who was primarily interested in politics and philosophy. I married a Philosophy/ International Relations double major and we spend many evenings discussing both over coffee.
8. I miss my father. It has been almost 3 years since he died peacefully in his sleep and I really miss him.
9. I still sleep with my "teddy mouse" every night. I took him to Russia with me. I took him to college with me. Now my husband sweetly consents to share our bed with Hans the mouse. I can't sleep unless I have him tucked under one arm.
10. I hate orange juice. I know it is good for me but I really can't stand it.
Here's who I'm tagging... well noone and everyone. I can't think of people to tag so I am not going to. But I would like to read about other people's randomness (what makes us an individual).
Thursday, January 31, 2008
Consistancy
The not so funny thing about having MS is that I sometimes get the feeling that I have no idea who I am supposed to be. Just as soon as I feel like I accepted my condition it changes. I hate the changes...not steady downhill changes but rather the upward changes. Or the uneven changes. I have secondary progressive MS. It's no walk in the park. I have to be able to wake up in the morning, look in the mirror, and say "so you can't do what you did a week ago and that's ok." I do that and then I have this great sense of peace. It's like I've jumped over the self acceptance hurdle. Taken another small step in my self confidence program.
Then boom. I wake up the next morning and have to say "Holy spotted cow! I can do this and this. I couldn't do that a week ago! Was I too quick to resign myself to another loss? Did I really lose my ability to pour a cup of coffee without spilling it everywhere? Have I been wasting paper towells." The self doubt sets in. Am I deluding myself? Do I make myself weaker than I really am? If I don't suceed at something is it because I have a horrible tendancy to expect failure? What does that make me? or the real question...is it all in my head?
Logically I know that I have MS. It is getting worse. I am not making it worse. I do stupid things that make my symptoms worse. But even if I didn't do stupid things it would get worse anyway. And the so called stupid things are the activities that I want to enjoy now. Those activities will eventually no longer be enjoyable. And sometimes it will be easier. My symptoms will get better. And really, logically, that's part of having MS. But logic doesn't always dictate emotion. There's a sign outside a shop on my very short drive home from work. Right now it reads "Don't believe everything you think." Hmm......Now I am taking advice from signs.
I have always thought of myself as a very physical person...defined myself by my physical abilties. I am a dancer, I am a fencer, I take hikes, walk my dogs, do construction projects, ride horses, and climb rocks. I like adventure and physical challenges. My list of "things to do during my life time" included climbing mountains, biking across the world, learning how to snowboard, and learning how to tango. Hmph. Yes...I can still do these things. Maybe. And certainly not in the very AB manner I imagined. Luckily I did not try to become a professional ballet dancer. I decided to go to school for academics instead and I excelled. But that doesn't stop the memories. The dreams of dancing and fencing. The dreams of running. The dreams of an old me. I wake up with my muscles tensed for a Tour jeté that never comes. Instead my legs are cramping. My heart is cramping. Sometimes I cry. I stretch my legs out. Point, flex, point and flex. Slowly they relax, but I remember. My body remembers. That hurts more than any other part of this bloody condition. Sure the cramps during the day hurt. It is agony. Sure stumbling over imaginay objects on the floor cause some quick recoveries and some slow motion falls. But nothing compares to the feeling of "I used to be able to do that". Nothing can fill the emptiness left by the words "I used to be a very physical person." Because now I am not.
I keep thinking that if I try harder, push myself further, and feel the burn in my legs that I recognize as a successful day of dance, then I can beat back the loss. I encounter more loss. I never learn. I look in the mirror and tell myself, "you can handle it. you know what is coming and you know it is ok." Logic sometimes fails. The emotion takes over and then it is almost unbearable. But what is really unbearable is the knowledge that the next day I might be able to do that which I could not do today. Is it too much to ask for consitancy? Will someone ever tell me to stop trying to do that I know I can't do? I don't think so. It is not their responsiblity. It is mine. I have to be able to accept that some days I will be able to do those things I could not the day before. And I have to be able to give up the things I could do the day before. And somewhere along the journey I have to be able to differentiate between things I can and cannot achieve.
A couple of nights ago I dreamed I was going fast. I acheived the same sense of freedom I remember from partnering in ballet. I felt the air rush by me. I was in my wheelchair. Perhaps it is a step forward?
Then boom. I wake up the next morning and have to say "Holy spotted cow! I can do this and this. I couldn't do that a week ago! Was I too quick to resign myself to another loss? Did I really lose my ability to pour a cup of coffee without spilling it everywhere? Have I been wasting paper towells." The self doubt sets in. Am I deluding myself? Do I make myself weaker than I really am? If I don't suceed at something is it because I have a horrible tendancy to expect failure? What does that make me? or the real question...is it all in my head?
Logically I know that I have MS. It is getting worse. I am not making it worse. I do stupid things that make my symptoms worse. But even if I didn't do stupid things it would get worse anyway. And the so called stupid things are the activities that I want to enjoy now. Those activities will eventually no longer be enjoyable. And sometimes it will be easier. My symptoms will get better. And really, logically, that's part of having MS. But logic doesn't always dictate emotion. There's a sign outside a shop on my very short drive home from work. Right now it reads "Don't believe everything you think." Hmm......Now I am taking advice from signs.
I have always thought of myself as a very physical person...defined myself by my physical abilties. I am a dancer, I am a fencer, I take hikes, walk my dogs, do construction projects, ride horses, and climb rocks. I like adventure and physical challenges. My list of "things to do during my life time" included climbing mountains, biking across the world, learning how to snowboard, and learning how to tango. Hmph. Yes...I can still do these things. Maybe. And certainly not in the very AB manner I imagined. Luckily I did not try to become a professional ballet dancer. I decided to go to school for academics instead and I excelled. But that doesn't stop the memories. The dreams of dancing and fencing. The dreams of running. The dreams of an old me. I wake up with my muscles tensed for a Tour jeté that never comes. Instead my legs are cramping. My heart is cramping. Sometimes I cry. I stretch my legs out. Point, flex, point and flex. Slowly they relax, but I remember. My body remembers. That hurts more than any other part of this bloody condition. Sure the cramps during the day hurt. It is agony. Sure stumbling over imaginay objects on the floor cause some quick recoveries and some slow motion falls. But nothing compares to the feeling of "I used to be able to do that". Nothing can fill the emptiness left by the words "I used to be a very physical person." Because now I am not.
I keep thinking that if I try harder, push myself further, and feel the burn in my legs that I recognize as a successful day of dance, then I can beat back the loss. I encounter more loss. I never learn. I look in the mirror and tell myself, "you can handle it. you know what is coming and you know it is ok." Logic sometimes fails. The emotion takes over and then it is almost unbearable. But what is really unbearable is the knowledge that the next day I might be able to do that which I could not do today. Is it too much to ask for consitancy? Will someone ever tell me to stop trying to do that I know I can't do? I don't think so. It is not their responsiblity. It is mine. I have to be able to accept that some days I will be able to do those things I could not the day before. And I have to be able to give up the things I could do the day before. And somewhere along the journey I have to be able to differentiate between things I can and cannot achieve.
A couple of nights ago I dreamed I was going fast. I acheived the same sense of freedom I remember from partnering in ballet. I felt the air rush by me. I was in my wheelchair. Perhaps it is a step forward?
Wednesday, January 30, 2008
Apology to a plastic B**ch
This pains me. I owe an apology to someone I have hated for many many years. I have come to understand at least a small bit of her life. And it really kills me to admit it. so here it goes, drum rolls please, oh my God this is hard to think of , much less write.... Barbie- I am sorry. I have always hated you for your perfect complexion, symmetrical features, impossible body, affluent lifestyle and pink corvette. I have never identified with any part of you- but now, gasp, I do. I now know how it feels to be undressed and dressed while lying there practically helpless. And I am sorry because I was never loving, gentle, or the least bit understanding. I ripped your perfect gowns off of you, wadded them up and then shoved you into the closest thing I had to barbie fatigues. I never thought about how it must feel when I pulled up your socks (wait...did Barbie ever have socks?). Or whether or not your underwear was comfortable. And any time I touched you it was with a fascinated revulsion rather than the pure love my husband used while trying to pull the socks over my comatose feet last night.
Last night my husband had to dress me. I lay there making pointed remarks about gray and brown not really matching and how clumsy my stupid legs were. How uncomfortable I was with this new development. And then I thought of Barbie. Shoot...suddenly I have something in common with Barbie.
In case you had not guessed I was not one of those little girls who doted on her Barbies. When I was three I might have thought playing Barbie was fun but by time I was in first grade she was hated. Every birthday...every Christmas...my granny would pick out a new Barbie for me. I tried to be grateful. After all every girl likes dolls (even dolls less freaky than Barbie), every girl wants to be a princess, and every girl likes to play house. I wanted a GI Joe, I pretended to be Thoren Oakenshield from the Hobbit, and I never pretended to be a perfect domestic goddess (after all I was Thoren and dwarfs don't appreciate fine dishes and fancy teas). To me playing house meant you had to pretend the house burned down during a nuclear holocaust and a band of survivors was crossing the unfriendly landscape, dodging enemy combatants, occasionally losing limbs to rockets and the scurvy, and finally staving to death because a vegetarian can't survive in those conditions. To quote Eddie Izzard, I was more of the running, jumping, climbing trees sort of girl.
Barbie I tried so very hard to appreciate. I would use magic marker to paint her face, shredded her clothes, gave her a buzz cut and try and helped her come to terms with her inner soldier. I then used her in warfare...she always got blown up, stabbed, and fell down precipices into raging rivers never to be seen again. I taught my sister the history of the Salem witch trials with Barbie. I demonstrated the use of the guillotine on her elongated neck. I was the perpetrator of many crimes against Barbiemanity. As I lay there last night, watching Scott struggle with my toes (which incidentally tend to curl upwards as they cramp as if I have on a pair of high heels made of air) I thought ....Freakin' Karma. I am sorry Barbie.
This morning I was feeling ever so much me like. I slept a little longer than usual. And seem to have recovered for my latest adventure of "stupid things I used to do but have discovered I no longer can do." I dressed myself. I picked out my own clothes (all good woodland colors...better for blending in with your environment). My feet are not pretending to wear hot pink stilettos. My hair didn't melt when I used the hairdryer. My skin is far from perfect and .... my smile isn't an advertisement for a minty whitening toothpaste that also glues your lips into a perfect smile. So I did not transform into Barbie overnight...good thing since I really have problems with Ken. But it has stayed with me. Karma....So I thought I'd publicly apologize...sorry Barbie. But she better remember this day forever because this is going to be the first and last time in history that a disabled person is going to apologise to the plastic bitch.
Last night my husband had to dress me. I lay there making pointed remarks about gray and brown not really matching and how clumsy my stupid legs were. How uncomfortable I was with this new development. And then I thought of Barbie. Shoot...suddenly I have something in common with Barbie.
In case you had not guessed I was not one of those little girls who doted on her Barbies. When I was three I might have thought playing Barbie was fun but by time I was in first grade she was hated. Every birthday...every Christmas...my granny would pick out a new Barbie for me. I tried to be grateful. After all every girl likes dolls (even dolls less freaky than Barbie), every girl wants to be a princess, and every girl likes to play house. I wanted a GI Joe, I pretended to be Thoren Oakenshield from the Hobbit, and I never pretended to be a perfect domestic goddess (after all I was Thoren and dwarfs don't appreciate fine dishes and fancy teas). To me playing house meant you had to pretend the house burned down during a nuclear holocaust and a band of survivors was crossing the unfriendly landscape, dodging enemy combatants, occasionally losing limbs to rockets and the scurvy, and finally staving to death because a vegetarian can't survive in those conditions. To quote Eddie Izzard, I was more of the running, jumping, climbing trees sort of girl.
Barbie I tried so very hard to appreciate. I would use magic marker to paint her face, shredded her clothes, gave her a buzz cut and try and helped her come to terms with her inner soldier. I then used her in warfare...she always got blown up, stabbed, and fell down precipices into raging rivers never to be seen again. I taught my sister the history of the Salem witch trials with Barbie. I demonstrated the use of the guillotine on her elongated neck. I was the perpetrator of many crimes against Barbiemanity. As I lay there last night, watching Scott struggle with my toes (which incidentally tend to curl upwards as they cramp as if I have on a pair of high heels made of air) I thought ....Freakin' Karma. I am sorry Barbie.
This morning I was feeling ever so much me like. I slept a little longer than usual. And seem to have recovered for my latest adventure of "stupid things I used to do but have discovered I no longer can do." I dressed myself. I picked out my own clothes (all good woodland colors...better for blending in with your environment). My feet are not pretending to wear hot pink stilettos. My hair didn't melt when I used the hairdryer. My skin is far from perfect and .... my smile isn't an advertisement for a minty whitening toothpaste that also glues your lips into a perfect smile. So I did not transform into Barbie overnight...good thing since I really have problems with Ken. But it has stayed with me. Karma....So I thought I'd publicly apologize...sorry Barbie. But she better remember this day forever because this is going to be the first and last time in history that a disabled person is going to apologise to the plastic bitch.
Tuesday, January 29, 2008
Poppin the cheerful bubble
Today, thus far, has gotten about a two and a half on a scale of one to ten. Where ten is the most splendid day imaginable. Two of those points are because my sister got a promotion at work. That half point is for the latte I got after lunch..which I spilled down my front. But the bit of latte I did have was really good. I am having one of those days where I really should sit down and catalog the good things in my life as to regain my sense of proportion and recapture that cheerful Crippled Mary Poppins demeanor I usually stumble around with. So...the good things...
1) My sis got word that she will be promoted. My husband, who works for the same company, learned that he is being promoted last week. This means that they are in the same position and will remain in the same position and that is really cool.
2) I got half of a latte after lunch. Actually I got a whole latte only half of it went in my stomach and half of it in my lap.
3)My brother-in-law took great care of me this morning and even got my wheelchair out of the car and brought it into work (we work together....yeah...sis and hubby work for the same company. Bro and I work for the same doctor who just happens to be his father- confused yet?) And even though I didn't use Ezra for too long I had a lot of fun while I did.
4)My pain is not a ten on a scale from one to ten. That would be the migraine I had where I finally determined that the only way to ease the pain was for my husband to chop my head off (then you can put it on a plate Richard III style..with strawberries). I lived through that-head intact and still attached to my shoulders via my neck. I can live through this. I think it might be only an eight on that very subjective pain scale which means it isn't in the double digits so I should ignore it ( I present to you the perfect example of a run-on sentence).
5) work ends in 2 hours and I am wasting time typing a blog. A blog which I am proud of because it got mentioned on the BBC ouch site thanks to Elizabeth of Screw Bronze fame. Wow...I am so very honored and happy. I feel like I almost have achieved my dream of getting published before reaching age 30. And since I found her blog through that very website this completes a full circle. So very cool. And I have a lot of really awesome virtual friends whose lives I relate to my husband as if I had just talked to them (he is a wise man and pretends to know them too).
6)I am going on vacation in less that 1 month. A real vacation.
So see...lots to be really grateful for (Let's go fly a Kite).
Things to not be grateful for:
1)I have freaking MS. I hurt. My legs are doing their Scarlet O'Hara act and swooning at the slightest sign of difficulty (like a short saunter across the room). The office I work in is not designed for wheelchair users. The weather is making my bones ache. I want to curl up on the couch and take a nice long nap after a good pity cry. I have a headache. This day is taking forever.....in short, all summed up into a nice little package, I have freaking MS.
Well, logic dictates that I weigh the pros and cons and tap into that little well of constant cheerful optimism. Right. And a spoonful of sugar...have I mentioned that Mary Poppins actually scares the hell out of me?
*Is it "A spoonful of sugar" or "A spoon full of sugar"? and does it make a difference?*
1) My sis got word that she will be promoted. My husband, who works for the same company, learned that he is being promoted last week. This means that they are in the same position and will remain in the same position and that is really cool.
2) I got half of a latte after lunch. Actually I got a whole latte only half of it went in my stomach and half of it in my lap.
3)My brother-in-law took great care of me this morning and even got my wheelchair out of the car and brought it into work (we work together....yeah...sis and hubby work for the same company. Bro and I work for the same doctor who just happens to be his father- confused yet?) And even though I didn't use Ezra for too long I had a lot of fun while I did.
4)My pain is not a ten on a scale from one to ten. That would be the migraine I had where I finally determined that the only way to ease the pain was for my husband to chop my head off (then you can put it on a plate Richard III style..with strawberries). I lived through that-head intact and still attached to my shoulders via my neck. I can live through this. I think it might be only an eight on that very subjective pain scale which means it isn't in the double digits so I should ignore it ( I present to you the perfect example of a run-on sentence).
5) work ends in 2 hours and I am wasting time typing a blog. A blog which I am proud of because it got mentioned on the BBC ouch site thanks to Elizabeth of Screw Bronze fame. Wow...I am so very honored and happy. I feel like I almost have achieved my dream of getting published before reaching age 30. And since I found her blog through that very website this completes a full circle. So very cool. And I have a lot of really awesome virtual friends whose lives I relate to my husband as if I had just talked to them (he is a wise man and pretends to know them too).
6)I am going on vacation in less that 1 month. A real vacation.
So see...lots to be really grateful for (Let's go fly a Kite).
Things to not be grateful for:
1)I have freaking MS. I hurt. My legs are doing their Scarlet O'Hara act and swooning at the slightest sign of difficulty (like a short saunter across the room). The office I work in is not designed for wheelchair users. The weather is making my bones ache. I want to curl up on the couch and take a nice long nap after a good pity cry. I have a headache. This day is taking forever.....in short, all summed up into a nice little package, I have freaking MS.
Well, logic dictates that I weigh the pros and cons and tap into that little well of constant cheerful optimism. Right. And a spoonful of sugar...have I mentioned that Mary Poppins actually scares the hell out of me?
*Is it "A spoonful of sugar" or "A spoon full of sugar"? and does it make a difference?*
Tuesday, January 22, 2008
Floors. I love floors. I never used to think about what a floor really meant but now it is one of the first things I notice when I enter a new environment. Since Ezra (the wheelchair) has entered my life my entire "floor experience" has undergone a drastic transformation. A new level of a appreciation has been reached.
My family would be quick to point out that I seem to devote a lot of time in discovering how to get as far away from the floor or ground as possible. I just love heights. I love that swoosh in your stomach as you look off the roof, a roller coaster or off a cliff. The swoosh that reminds you that you are mortal and just one small step, one misplaced hand, on moment of questionable balance could result in....catastrophic injury or death. But, with that being said, I have to say that I think the ground (an by extension floors) are often overlooked.
My appreciation for floors is relatively new. I started walking with a cane because my balance is a tad unpredictable. And occasionally my legs decide they don't want to go where I want them to. Or sometimes they decide that massive muscle cramps are in order and sometimes they just say "bugger off...we've been hauling around your stupid trunk, arms and head for long enough" and they slowly crumple. This had caused numerous falls, swoons, and other rather alarming and embarrassing moments while out in public . You'd think that they would at least show enough respect for my tender feeling to only act up in private but alas...my legs are natural entertainers.
I have mastered the graceful fall. I feel my balance going and do a mental check on whether or not there is any way to recover. If there isn't I let myself down slowly and just end up sitting on the floor. I usually manage to fell in such a way that I don't hit my head against anything. I really prefer the stealthy fall that doesn't make everyone around me go into cardiac arrest. Also it means I end up with fewer bruises, aches and pains. And you know what is always there to catch me? The floor. Always. It doesn't matter if I was sitting on a chair, attempting a pirouette, balancing on a desk chair, hopping on one foot, or tripping over the cat (I know most of therse things are stupid things to be doing...but it happens), the floor always catches me. Sometimes gently...sometimes roughly. And for that I am so incredibly grateful.
Recently our relationship has changed drastically. No longer is it a one way affair that consists of me lying with my cheek pressed against the carpet crooning "Lean on me, when you're not strong, And I'll be your friend, I'll help you carry on." Ezra has evened the playing field. Now I look at the floor as something more than a ever present landing pad. Now I roll into a room and evaluate its surface. Smooth tile is the best. Low pile carpet is ok but offers a little too much resistance. Medium pile carpet is like walking across a rain drenched lawn and shag carpet is like quick sand.
I like going to malls, grocery stores and out in public now. Those smooth floors just designed to increase your speed. Going down ramps, cornering and trying to estimate the best way to get through narrow spaces. Dodging pyramids of canned peaches and careful displays of glass bowls. This brings great joy to my life. I am no longer limping behind the shopping cart occasionally sinking to the floor in dignified manner. Instead I am a threat to little old ladies and towers of produce. And beneath my wheels I can hear the floor sing.
Thus ends my tribute to floors.
My family would be quick to point out that I seem to devote a lot of time in discovering how to get as far away from the floor or ground as possible. I just love heights. I love that swoosh in your stomach as you look off the roof, a roller coaster or off a cliff. The swoosh that reminds you that you are mortal and just one small step, one misplaced hand, on moment of questionable balance could result in....catastrophic injury or death. But, with that being said, I have to say that I think the ground (an by extension floors) are often overlooked.
My appreciation for floors is relatively new. I started walking with a cane because my balance is a tad unpredictable. And occasionally my legs decide they don't want to go where I want them to. Or sometimes they decide that massive muscle cramps are in order and sometimes they just say "bugger off...we've been hauling around your stupid trunk, arms and head for long enough" and they slowly crumple. This had caused numerous falls, swoons, and other rather alarming and embarrassing moments while out in public . You'd think that they would at least show enough respect for my tender feeling to only act up in private but alas...my legs are natural entertainers.
I have mastered the graceful fall. I feel my balance going and do a mental check on whether or not there is any way to recover. If there isn't I let myself down slowly and just end up sitting on the floor. I usually manage to fell in such a way that I don't hit my head against anything. I really prefer the stealthy fall that doesn't make everyone around me go into cardiac arrest. Also it means I end up with fewer bruises, aches and pains. And you know what is always there to catch me? The floor. Always. It doesn't matter if I was sitting on a chair, attempting a pirouette, balancing on a desk chair, hopping on one foot, or tripping over the cat (I know most of therse things are stupid things to be doing...but it happens), the floor always catches me. Sometimes gently...sometimes roughly. And for that I am so incredibly grateful.
Recently our relationship has changed drastically. No longer is it a one way affair that consists of me lying with my cheek pressed against the carpet crooning "Lean on me, when you're not strong, And I'll be your friend, I'll help you carry on." Ezra has evened the playing field. Now I look at the floor as something more than a ever present landing pad. Now I roll into a room and evaluate its surface. Smooth tile is the best. Low pile carpet is ok but offers a little too much resistance. Medium pile carpet is like walking across a rain drenched lawn and shag carpet is like quick sand.
I like going to malls, grocery stores and out in public now. Those smooth floors just designed to increase your speed. Going down ramps, cornering and trying to estimate the best way to get through narrow spaces. Dodging pyramids of canned peaches and careful displays of glass bowls. This brings great joy to my life. I am no longer limping behind the shopping cart occasionally sinking to the floor in dignified manner. Instead I am a threat to little old ladies and towers of produce. And beneath my wheels I can hear the floor sing.
Thus ends my tribute to floors.
Saturday, January 19, 2008
Senses
When I was in the fourth grade I remember the teacher asking us which of our five senses we could do without. We were studying the senses in health and she really wanted us to think about it. We were assigned homework. All we had to do was go home and think about it and have our answer ready by the next day. I thought it was an odd assignment but agonized over what my answer would be. I was a pretty serious little girl in that dorky bookwormish sort of way. The fact is this is probably the only assignment I really remember from that entire year because it struck me as being pretty insightful. Or it could have been.
I agonized over what to choose. I never would willingly give up any of my five senses. Taste and Smell are intertwined so closely that to give up one is pretty much a two for one deal. Hearing...well my grandfather had been 95% deaf since WWII. He was one of the most amazing people I ever met and he fully expected the rest of the world to accept the fact that he was amazing- not because he was deaf but because he was just freaking amazing. And we did. Pretty cool. But I couldn't stand the idea of losing classical music. I couldn't imagine not being able to follow one instrument line in an entire symphony (I told you I was a really really dorky kid--classical at age 10--I was so misunderstood). The sense of Touch- In my young mind this was the most terrifying sense to lose. Couldn't think of the implications of losing your sense of touch. Eyesight- well, almost as terrifying. But I wore big ugly glasses and had a lot of trouble seeing without them. I am a very visually oriented person. I have been able to read since a very young age and am rarely without a book. I love art. I love museums. I love art history. And I love standing on the cliffs above the ocean and watching the water smash into the rocks. I love looking at plants and birds and people.
So the next day I gave my answer. I was the only person who would choose to give up my eyesight over any of my other senses. My classmates were horrified. But the way I figured it was that I could still read without my eyes. I could still enjoy the paintings if some one else described the (and everyone else would describe them differently because everyone sees them differently). I could hear, smell, and feel the ocean. I can feel, taste and smell plant. I can hear the birds. And people...people are pretty or ugly whether you can see them or not.
It felt like a life changing decision. Odd. Like I suddenly had insight into what people thought was important in life. Nobody understood how I could give up sight and I suddenly understood that the fact that I was a rather ugly child might be to my disadvantage. But I knew, at a pretty early age, why I found life so amazing. It did not matter how I perceived the world around me...what mattered was that I could perceive the world around me. That is part of being human. It doesn't matter if you are disabled or abledbodied. Because the truth was I could go on despite losing one of my senses and it wouldn't ruin my life. I was more than that. We are all more than that. And that's a pretty intense lesson for a ten year old.
I think I remember that health class because that was the year I had my first possible relapse with MS. I had intense headaches, I lost my balance every time I stood up. I couldn't focus and I was sooo very tired. I laid on the couch, did my missed school assignments, read the Narnia books over and over, and saw lots of doctors. My parents were terrified. My doctors had no idea what was going on and I was too tired to care. They ran tons of tests but never even considered MS (I was way too young). Finally they decided I was having a psychosomatic episode. At age ten. Because I was bored at school (because lying at home on the couch was so much more exciting). I finally got better and went back to school, ballet, and hiking. And forgot about the mystery illness and the health class.
I had several other weird symptoms growing up, all to do with my eyesight, and because they had already diagnosed me as psychosomatic the symptoms were ignored by everyone but my family and myself. I always got better. My eyesight worsened but was correctable. My balance and hand-eye coordination were always off but I worked hard to compensate. And because they misdiagnosed me I wasn't protected from doing things I really wanted to do. I danced, I hiked for miles by myself, I climbed rocks, and I lived the life of a normal if slightly eccentric teenager. I was an exchange student to Russia in 1995-6 and then went on to attend college at the University of the South. I was never told that I couldn't do things, always encouraged to push the limit, and pretty much thought I could accomplish it all.
I was a sophomore in college when my foot went asleep and was still asleep ten days later. I figured out, in my fencing class (trying to recover from a Passata-sotto into a fleche- silly stunt), that I couldn't feel anything below my left knee. I had my diagnosis four days later and entered into a new world. A world of limitations...both real and those imposed by society. You know...I think I could still accomplish almost anything but there is a really good chance I'd kill myself in the process. However I am always going to be grateful for that lack of a diagnosis at an early age. It did not effect the progression of the MS and I was never "protected" from things that I really wanted to do.
And my fourth grade health class is remembered. I thought I couldn't survive with out tactile sensation. I was wrong. But the revelations that came to me as a ten year old turned out to be pretty useful for me as an adult. Oh, and I wish to add another set of senses to that list. Empathy, Persistence, Understanding, Inquisitiveness and the all important, often flung around, always underestimated, Love. Those I could not live without.
I agonized over what to choose. I never would willingly give up any of my five senses. Taste and Smell are intertwined so closely that to give up one is pretty much a two for one deal. Hearing...well my grandfather had been 95% deaf since WWII. He was one of the most amazing people I ever met and he fully expected the rest of the world to accept the fact that he was amazing- not because he was deaf but because he was just freaking amazing. And we did. Pretty cool. But I couldn't stand the idea of losing classical music. I couldn't imagine not being able to follow one instrument line in an entire symphony (I told you I was a really really dorky kid--classical at age 10--I was so misunderstood). The sense of Touch- In my young mind this was the most terrifying sense to lose. Couldn't think of the implications of losing your sense of touch. Eyesight- well, almost as terrifying. But I wore big ugly glasses and had a lot of trouble seeing without them. I am a very visually oriented person. I have been able to read since a very young age and am rarely without a book. I love art. I love museums. I love art history. And I love standing on the cliffs above the ocean and watching the water smash into the rocks. I love looking at plants and birds and people.
So the next day I gave my answer. I was the only person who would choose to give up my eyesight over any of my other senses. My classmates were horrified. But the way I figured it was that I could still read without my eyes. I could still enjoy the paintings if some one else described the (and everyone else would describe them differently because everyone sees them differently). I could hear, smell, and feel the ocean. I can feel, taste and smell plant. I can hear the birds. And people...people are pretty or ugly whether you can see them or not.
It felt like a life changing decision. Odd. Like I suddenly had insight into what people thought was important in life. Nobody understood how I could give up sight and I suddenly understood that the fact that I was a rather ugly child might be to my disadvantage. But I knew, at a pretty early age, why I found life so amazing. It did not matter how I perceived the world around me...what mattered was that I could perceive the world around me. That is part of being human. It doesn't matter if you are disabled or abledbodied. Because the truth was I could go on despite losing one of my senses and it wouldn't ruin my life. I was more than that. We are all more than that. And that's a pretty intense lesson for a ten year old.
I think I remember that health class because that was the year I had my first possible relapse with MS. I had intense headaches, I lost my balance every time I stood up. I couldn't focus and I was sooo very tired. I laid on the couch, did my missed school assignments, read the Narnia books over and over, and saw lots of doctors. My parents were terrified. My doctors had no idea what was going on and I was too tired to care. They ran tons of tests but never even considered MS (I was way too young). Finally they decided I was having a psychosomatic episode. At age ten. Because I was bored at school (because lying at home on the couch was so much more exciting). I finally got better and went back to school, ballet, and hiking. And forgot about the mystery illness and the health class.
I had several other weird symptoms growing up, all to do with my eyesight, and because they had already diagnosed me as psychosomatic the symptoms were ignored by everyone but my family and myself. I always got better. My eyesight worsened but was correctable. My balance and hand-eye coordination were always off but I worked hard to compensate. And because they misdiagnosed me I wasn't protected from doing things I really wanted to do. I danced, I hiked for miles by myself, I climbed rocks, and I lived the life of a normal if slightly eccentric teenager. I was an exchange student to Russia in 1995-6 and then went on to attend college at the University of the South. I was never told that I couldn't do things, always encouraged to push the limit, and pretty much thought I could accomplish it all.
I was a sophomore in college when my foot went asleep and was still asleep ten days later. I figured out, in my fencing class (trying to recover from a Passata-sotto into a fleche- silly stunt), that I couldn't feel anything below my left knee. I had my diagnosis four days later and entered into a new world. A world of limitations...both real and those imposed by society. You know...I think I could still accomplish almost anything but there is a really good chance I'd kill myself in the process. However I am always going to be grateful for that lack of a diagnosis at an early age. It did not effect the progression of the MS and I was never "protected" from things that I really wanted to do.
And my fourth grade health class is remembered. I thought I couldn't survive with out tactile sensation. I was wrong. But the revelations that came to me as a ten year old turned out to be pretty useful for me as an adult. Oh, and I wish to add another set of senses to that list. Empathy, Persistence, Understanding, Inquisitiveness and the all important, often flung around, always underestimated, Love. Those I could not live without.
Thursday, January 17, 2008
short lunch
I tried to take the shortest lunch possible today. I live about a mile and a half from work (a very good thing if you can't feel the gas and brake pedals when you drive and are "resisting' getting hand controls for your car). I thought 15 minutes max. I went home, inhaled some cabbage salad and yogurt, and then the doorbell rang. I couldn't pretend not to be home because my garage door was wide open showing the world the contents of my incredibly messy garage (recycling, trash can, two old lawn mowers, shower bench...you get the general idea). So I answered it.
Usually when people knock on my door in the middle of the day it is to deliver a package or to read me a religious tract printed on non-recycled paper that informs me that I am going straight to hell. I don't mind the mailman. Hell, I don't even mind the people toting parts of the Bible around on photocopied pieces of paper that will just get wadded up and thrown away. I figure that if they want to spend part of their day worrying about the state of my soul I should be grateful. My husband will actually spend several hours with them espousing the virtues of different philosophies with regard to one's soul and whether or not the soul really exists. He enjoys it. He quotes Plato, Aristotle, Kant, Aquinas, and Nietzsche. Then he refers to as many religious and spiritual texts as he can ("Girl? will you get all six edition of the Bible, the Torah, the Quoran, and the The Bhagavad Gita for me? They are on the reference bookshelf next to the Gazetteer and the Oxford English Dictionary"). After a couple hours they usually give him, and by extension me, up as a lost cause and by that I mean a lost soul. And then we have to put all the books away.
Honestly I enjoy these exchanges. They are generally less painful for me than the person standing on my porch. And it's human interaction....nothing to complain about. Sadly they rarely come back and I haven't been able to figure out why. So when I opened the door today I was expecting a lecture on the state of my soul (sounds political doesn't it?). Instead it was a man worried about the state of my financial well being...as in a representative for an investment firm. Uhm....what can we talk about? I have no extra money to invest. I have no investments. I barely have a savings account. And by all accounts I am really really lucky.
Since people knocking on my door is evidently a sign from the Almighty (and they are worried about my soul- pah!) for me to deliver a lecture about the state of the world I decided to give him a speech a financial theme to it. I explained that I had no money to invest because I live in a country where we treat people like cars, or houses, or personal property. Where health care is determined by commercial interests rather than human interests. Where my medicine, if I did not have good prescription coverage, is worth twice as much as me($34,000/year vs the $17,000/year I make). Where people are dying because they are encouraged not to see a doctor as it is too expensive. Where the elderly make difficult choices between what medicine the take because they can't afford every medicine they need. A place where the politicians try to tweak the existing system to make it more affordable- not more accessible. A place where it take 4-5 months to get in to see a specialist if you have health insurance and longer if you don't. Yeah...and you know what? I feel better. I feel great. And then, just because I thought he should know, I told him about Brent Martin.
So my short lunch turned into a really really long lunch and I have to really thank that guy...he made my day more worthwhile. Because we engaged in a good heart to heart about an issue that really affects us all (ok-pun was not intended). So thank you for ruining my short lunch Mr. Investment firm guy.... it was actually the best kind of lunch I could imagine
Usually when people knock on my door in the middle of the day it is to deliver a package or to read me a religious tract printed on non-recycled paper that informs me that I am going straight to hell. I don't mind the mailman. Hell, I don't even mind the people toting parts of the Bible around on photocopied pieces of paper that will just get wadded up and thrown away. I figure that if they want to spend part of their day worrying about the state of my soul I should be grateful. My husband will actually spend several hours with them espousing the virtues of different philosophies with regard to one's soul and whether or not the soul really exists. He enjoys it. He quotes Plato, Aristotle, Kant, Aquinas, and Nietzsche. Then he refers to as many religious and spiritual texts as he can ("Girl? will you get all six edition of the Bible, the Torah, the Quoran, and the The Bhagavad Gita for me? They are on the reference bookshelf next to the Gazetteer and the Oxford English Dictionary"). After a couple hours they usually give him, and by extension me, up as a lost cause and by that I mean a lost soul. And then we have to put all the books away.
Honestly I enjoy these exchanges. They are generally less painful for me than the person standing on my porch. And it's human interaction....nothing to complain about. Sadly they rarely come back and I haven't been able to figure out why. So when I opened the door today I was expecting a lecture on the state of my soul (sounds political doesn't it?). Instead it was a man worried about the state of my financial well being...as in a representative for an investment firm. Uhm....what can we talk about? I have no extra money to invest. I have no investments. I barely have a savings account. And by all accounts I am really really lucky.
Since people knocking on my door is evidently a sign from the Almighty (and they are worried about my soul- pah!) for me to deliver a lecture about the state of the world I decided to give him a speech a financial theme to it. I explained that I had no money to invest because I live in a country where we treat people like cars, or houses, or personal property. Where health care is determined by commercial interests rather than human interests. Where my medicine, if I did not have good prescription coverage, is worth twice as much as me($34,000/year vs the $17,000/year I make). Where people are dying because they are encouraged not to see a doctor as it is too expensive. Where the elderly make difficult choices between what medicine the take because they can't afford every medicine they need. A place where the politicians try to tweak the existing system to make it more affordable- not more accessible. A place where it take 4-5 months to get in to see a specialist if you have health insurance and longer if you don't. Yeah...and you know what? I feel better. I feel great. And then, just because I thought he should know, I told him about Brent Martin.
So my short lunch turned into a really really long lunch and I have to really thank that guy...he made my day more worthwhile. Because we engaged in a good heart to heart about an issue that really affects us all (ok-pun was not intended). So thank you for ruining my short lunch Mr. Investment firm guy.... it was actually the best kind of lunch I could imagine
Wednesday, January 9, 2008
I will fight...
...for my right to be disabled. That sounds really melodramatic so let me explain. Ever since I have been diagnosed with MS i have been urged to keep fighting. "Don't give in- just keep fighting". "It's good to see you. You look good. You're a fighter." "I see you use a cane now...but don't give in- keep fighting." I can pretty much mouth the words along with whomever is speaking. I know ...just keep fighting. That's a load of crap. What, may I ask, am I fighting against?
I took those words to heart for the first seven years of my diagnosis. I fought and fought. I fought with my legs. I fought with my body. I consumed copious amounts of caffeine just to stay alert. I forced myself to do things that my body protested against. I fought. But how do you fight MS? It's not an enemy. Its not an outside unseen force that threatens to overwhelm you and occupy your body turning you into a flesh eating zombie. It's not an infectious disease that a few days/weeks in a hospital bed can cure. It's me. I am the MS. My immune system is doing the damage to my nerves so my legs can't communicate. Fighting this just means I am fighting myself. By not recognizing that I am the MS, by rejecting this condition as an inherent part of me, I am denying part of myself. And I think that might be just a tad unhealthy.
This "just keep fighting" attitude goes hand and hand with "I know/heard of/watched a show on this person with MS and he/she ran a marathon/climbed a fucking high mountain/rode their bike across eighteen different continents/got 25 post graduate degrees/crossed the Gobi desert hopping on one foot with their left arm duct taped behind their back." I resent these helpful stories. They are stories of amazing achievement and personal strength...and they would be if ablebodied people did them too. But for me these stories seem to imply "and if they can do it why can't you?" Because I'm not them am I? I ride my stationary bike 5 miles a day ('cause it doesn't fall over as soon as I look at it much less try to ride it). I have a bachelor's degree that took a hell of a lot of effort, not to mention money, and was well worth it. I like looking at pictures of the Gobi desert and fucking tall mountains. I could partake in a marathon if I wanted to. I would trip, stumble, and do my Captain Jack Sparrow walk for the first 1/4 mile and crawl the rest of the 25 plus miles. Not much fun, hell on the knees and not the best way to enjoy the scenery.
So now... since I have stopped fighting I am happier. That sounds so corny and a lot of people would say that it sounds a bit defeatist but the truth is they asked me to fight a battle I could not win. MS is not something I can overcome. It is with me for the rest of my life. It is my legs. It is the pain. It is the fatigue, the walk, the cane, the wheels, the handicapped parking tag....in short it is me. I can hate my life sometimes. I can yell and cry in frustration. I can remember the good ol'days with fondness but the truth is...this is me. And you know what, despite it all, I really like me.
I am a pacifist by nature. I refuse to fight...I just am. So next time I hear one bloody word about fighting the good fight I am going to punch whoever says it in the mouth.
I took those words to heart for the first seven years of my diagnosis. I fought and fought. I fought with my legs. I fought with my body. I consumed copious amounts of caffeine just to stay alert. I forced myself to do things that my body protested against. I fought. But how do you fight MS? It's not an enemy. Its not an outside unseen force that threatens to overwhelm you and occupy your body turning you into a flesh eating zombie. It's not an infectious disease that a few days/weeks in a hospital bed can cure. It's me. I am the MS. My immune system is doing the damage to my nerves so my legs can't communicate. Fighting this just means I am fighting myself. By not recognizing that I am the MS, by rejecting this condition as an inherent part of me, I am denying part of myself. And I think that might be just a tad unhealthy.
This "just keep fighting" attitude goes hand and hand with "I know/heard of/watched a show on this person with MS and he/she ran a marathon/climbed a fucking high mountain/rode their bike across eighteen different continents/got 25 post graduate degrees/crossed the Gobi desert hopping on one foot with their left arm duct taped behind their back." I resent these helpful stories. They are stories of amazing achievement and personal strength...and they would be if ablebodied people did them too. But for me these stories seem to imply "and if they can do it why can't you?" Because I'm not them am I? I ride my stationary bike 5 miles a day ('cause it doesn't fall over as soon as I look at it much less try to ride it). I have a bachelor's degree that took a hell of a lot of effort, not to mention money, and was well worth it. I like looking at pictures of the Gobi desert and fucking tall mountains. I could partake in a marathon if I wanted to. I would trip, stumble, and do my Captain Jack Sparrow walk for the first 1/4 mile and crawl the rest of the 25 plus miles. Not much fun, hell on the knees and not the best way to enjoy the scenery.
So now... since I have stopped fighting I am happier. That sounds so corny and a lot of people would say that it sounds a bit defeatist but the truth is they asked me to fight a battle I could not win. MS is not something I can overcome. It is with me for the rest of my life. It is my legs. It is the pain. It is the fatigue, the walk, the cane, the wheels, the handicapped parking tag....in short it is me. I can hate my life sometimes. I can yell and cry in frustration. I can remember the good ol'days with fondness but the truth is...this is me. And you know what, despite it all, I really like me.
I am a pacifist by nature. I refuse to fight...I just am. So next time I hear one bloody word about fighting the good fight I am going to punch whoever says it in the mouth.
Wednesday, January 2, 2008
The ugly truth
I am looking at shower seats to make my morning routine happier, easier and less precarious. Having recently taken a little tumble in my shower I have decided that maybe it is time to consider accessibility in the home. I really suck at this part of becoming increasingly disabled. I like climbing things. I like balancing on the bed while reaching above me to change the light bulb in the bedroom. I have fun climbing on counters to paint the bathroom wall above the mirror. I enjoy storing things in hard to reach places. None of these activities are doctor/husband/family approved. In the back of my mind even I acknowledge that I am being more than a little stupid. But that excitement...that risk...it makes it all worth it.
However, slipping in the shower has made me reconsider the eventual side effects of shaving one's right leg while balancing on the left with a razor blade in the other hand and water dripping in your face. Sure it's a safety razor and if I cut my leg I won't feel it, but think of the embarrassment of visiting the emergency room, buck naked, because my pride did not allow for a shower seat. Or safety handles in the shower. And so I finally bought an electric razor/trimmer. It's pink. It's rechargeable. I can sit on the toilet and shave both legs without pretending to be an elephant balancing on a baseball. And I think I like it. It's pretty.
But this morning I realized that shaving one's legs is not the only time in the shower where one's balance is brought into question. I have questionable balance all of the time. It's just the combination of water and soap and cheap enamel tub that makes showering the ultimate endurance test every morning. And here's the bad part... I already have a shower bench. It lives in the garage and occasionally is pulled into the garden to be used as a seat while weeding. Right now, seeing as it is winter, I believe it is gathering a most impressive collection of spider webs.
It is so ugly. It's grey and big and close to impossible to use. I sit facing forward into the water and soap up. At that point I need to turn around and soap my back. There is no extra room in the tub so I have to turn off the water (so when I open the shower curtain it won't spray the bathroom floor) and haul first one and then the second leg over the edge of the bathtub and back over. So now I have effectively turned my back to the knob that I need to be facing to turn the water back on. I perform this flexible, twisty-no longer have a center of balance move that turns the water on so I can soap my back and rinse. Then I need to rinse my front. So repeat twisty move to turn off water, lifting legs over side of tub, repositioning to rinse and turn on water. By this time I am usually out of hot water, have poured gallons of the stuff on the bathroom floor, have collected an assortment of ghastly bruises on my unfeeling lower limbs and have still not figured out how to wash my hair. Hmm...stand up, remove shower stool, lean against bathtub wall and wash hair. Try not to fall while stepping out of tub. Sit on edge of tub to towel dry. Sit on toilet to put on clothes and shoes. Remove useless shower bench and store in garage because there is no room for it in our bathroom and my husband needs to take a shower (remember...bathroom floor all wet and there is no hot water). You see the dilemma. But even if I found the perfect shower stool, that folded and fit in my tub and had a lazy-susan on top for my butt so I could twirl around with out lifting a foot, the fact remains it would be ugly.
Most medical equipment is just plain ugly. Shower stools are ugly (even the pink breast cancer awareness one). Grab handles are ugly. Wheelchair ramps are ugly. Just look at the medical equipment out there and try to say that it is attractive. Its is functional. And for that I am grateful because there will be a time when functionality wins out over vanity. But not yet. My cane...I walk with a quad cane...is really not attractive. Alfred lives in the coat closet at home because he really is ugly. Trudy, my slightly smaller and more demure quad cane, is slowly being transformed into something more individualistic. But let's be honest. She was ugly when I got her. Ezra, my chair, is really quite handsome for what he is in that sort of the best of a bad litter sort of way. And he is functional. Until I can afford an ultralight wheelchair I have to be happy with functional. And everyone seems fine with this ("it isn't pretty but it is functional and that's what really matters"). You know what? That's complete bull. Why can't things be pretty and functional. Why are pretty thing so much more expensive. Pretty canes (and boy can they be hideous) always cost more than their more functional counterparts. Beautiful wheel chairs are not for a part time chair user like myself. (but there are some really sexy chairs out there). Hell, even wheelchair gloves tend to be ugly. I am a girl that likes pretty things. With the slow deterioration of my body I don't see a corresponding decline in my aesthetic tastes. So...pretty medical equipment...can I please have Marimekko Poppies on my wheel chair ramps and Chagall-esqe (I made that word up) goats on my canes? Thank you.
However, slipping in the shower has made me reconsider the eventual side effects of shaving one's right leg while balancing on the left with a razor blade in the other hand and water dripping in your face. Sure it's a safety razor and if I cut my leg I won't feel it, but think of the embarrassment of visiting the emergency room, buck naked, because my pride did not allow for a shower seat. Or safety handles in the shower. And so I finally bought an electric razor/trimmer. It's pink. It's rechargeable. I can sit on the toilet and shave both legs without pretending to be an elephant balancing on a baseball. And I think I like it. It's pretty.
But this morning I realized that shaving one's legs is not the only time in the shower where one's balance is brought into question. I have questionable balance all of the time. It's just the combination of water and soap and cheap enamel tub that makes showering the ultimate endurance test every morning. And here's the bad part... I already have a shower bench. It lives in the garage and occasionally is pulled into the garden to be used as a seat while weeding. Right now, seeing as it is winter, I believe it is gathering a most impressive collection of spider webs.
It is so ugly. It's grey and big and close to impossible to use. I sit facing forward into the water and soap up. At that point I need to turn around and soap my back. There is no extra room in the tub so I have to turn off the water (so when I open the shower curtain it won't spray the bathroom floor) and haul first one and then the second leg over the edge of the bathtub and back over. So now I have effectively turned my back to the knob that I need to be facing to turn the water back on. I perform this flexible, twisty-no longer have a center of balance move that turns the water on so I can soap my back and rinse. Then I need to rinse my front. So repeat twisty move to turn off water, lifting legs over side of tub, repositioning to rinse and turn on water. By this time I am usually out of hot water, have poured gallons of the stuff on the bathroom floor, have collected an assortment of ghastly bruises on my unfeeling lower limbs and have still not figured out how to wash my hair. Hmm...stand up, remove shower stool, lean against bathtub wall and wash hair. Try not to fall while stepping out of tub. Sit on edge of tub to towel dry. Sit on toilet to put on clothes and shoes. Remove useless shower bench and store in garage because there is no room for it in our bathroom and my husband needs to take a shower (remember...bathroom floor all wet and there is no hot water). You see the dilemma. But even if I found the perfect shower stool, that folded and fit in my tub and had a lazy-susan on top for my butt so I could twirl around with out lifting a foot, the fact remains it would be ugly.
Most medical equipment is just plain ugly. Shower stools are ugly (even the pink breast cancer awareness one). Grab handles are ugly. Wheelchair ramps are ugly. Just look at the medical equipment out there and try to say that it is attractive. Its is functional. And for that I am grateful because there will be a time when functionality wins out over vanity. But not yet. My cane...I walk with a quad cane...is really not attractive. Alfred lives in the coat closet at home because he really is ugly. Trudy, my slightly smaller and more demure quad cane, is slowly being transformed into something more individualistic. But let's be honest. She was ugly when I got her. Ezra, my chair, is really quite handsome for what he is in that sort of the best of a bad litter sort of way. And he is functional. Until I can afford an ultralight wheelchair I have to be happy with functional. And everyone seems fine with this ("it isn't pretty but it is functional and that's what really matters"). You know what? That's complete bull. Why can't things be pretty and functional. Why are pretty thing so much more expensive. Pretty canes (and boy can they be hideous) always cost more than their more functional counterparts. Beautiful wheel chairs are not for a part time chair user like myself. (but there are some really sexy chairs out there). Hell, even wheelchair gloves tend to be ugly. I am a girl that likes pretty things. With the slow deterioration of my body I don't see a corresponding decline in my aesthetic tastes. So...pretty medical equipment...can I please have Marimekko Poppies on my wheel chair ramps and Chagall-esqe (I made that word up) goats on my canes? Thank you.
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